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Lewy Body Dementia Association
What is Lewy body dementia (LBD)?
Lewy body dementia (LBD) is a common, progressive brain disease that affects thinking, movement, behavior and sleep. Approximately 1.3 million Americans have LBD, but many go un-diagnosed because some doctors are unfamiliar with LBD. Most people with LBD will see several different doctors over a year or two before receiving a diagnosis of Lewy body dementia.
Symptoms and Diagnosis
LBD symptoms include dementia, Parkinson’s-like movement problems, hallucinations and changes in mood, variations in cognitive ability, attention or alertness, certain sleep disorders and problems with automated functions such as blood pressure.
The most common sleep disorder in LBD is called REM sleep behavior disorder (RBD), in which people physically act out their dreams. During periods of REM sleep, a person with LBD will move, gesture and/or speak, and there may be confusion between the dream and reality upon waking. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD and Parkinson’s disease.
Lewy body dementia is a general term and includes two related conditions that have similar combinations of symptoms. There are two forms of LBD; Dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). Dementia with Lewy bodies (DLB) is diagnosed when an individual develops dementia and around the same time or later also develops parkinsonism. DLB is often misdiagnosed as Alzheimer’s disease. When a person with movement problems is diagnosed with Parkinson’s disease, but after a year or more develops dementia, and this is called Parkinson’s disease dementia (PDD).
Is It LBD or Something Else?
Early and accurate diagnosis of LBD, while not always easy to do, is of critical importance. People with LBD may respond more favorably to certain dementia medications than people with Alzheimer’s, allowing for early treatment that may improve or extend the quality of life for both the person with LBD and their caregiver. Also, many people with LBD respond poorly to certain medications for behavior and movement than people with Alzheimer’s or Parkinson’s, sometimes with dangerous or permanent side effects.
Many LBD symptoms are highly treatable and aggressive symptom detection and treatment can improve quality of life for both the person with LBD and their caregiver. Some Alzheimer’s and Parkinson’s medications can help cognition, behavior and movement symptoms. Family caregivers are an important link in the partnership with healthcare professionals and also require significant support throughout the illness. It is important to build a knowledgeable LBD healthcare team to address the needs of both the person with LBD and their primary caregiver.
The Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to supporting those affect by LBD through outreach, education and research. Resources available to caregivers include online discussion forums where caregivers meet and share their experiences, a national network of LBD support groups and the LBD Caregiver Link – 1-800-LEWYSOS.
Learn more about LBD and LBDA.
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